BLOG 5: Challenges of Sanfilippo

Sanfilippo Syndrome: Understanding Challenges and Accommodations

Sanfilippo Syndrome, also known as mucopolysaccharidosis type III (MPS III), is a rare genetic disorder characterized by the body's inability to break down certain sugars. This results in the buildup of harmful substances in the body, leading to severe neurological deterioration. In this blog post, we will comprehensively discuss the challenges faced by individuals with Sanfilippo Syndrome, explore solutions and accommodations, address issues encountered by family members, examine challenges in societal areas, and underscore the importance of societal awareness and implementation of accommodations for those with this disability. (Mucopolysaccharidosis type III: Medlineplus genetics 2024) 



Challenges and Solutions

Individuals with Sanfilippo Syndrome face numerous challenges, primarily related to neurological decline, cognitive impairment, behavioral problems, and physical limitations. Symptoms typically manifest in early childhood and progressively worsen over time, severely impacting the quality of life. However, various interventions and treatments aim to alleviate symptoms and improve the overall well-being of affected individuals. While there is currently no cure for Sanfilippo Syndrome, supportive therapies such as physical therapy, occupational therapy, speech therapy, and behavioral interventions can help manage symptoms and enhance functional abilities.  (Marcin, 2022)



Challenges and Issues for Family Members

Family members of individuals with Sanfilippo Syndrome encounter significant emotional, financial, and practical challenges. Caring for a child with a progressive and debilitating condition can be emotionally taxing, leading to stress, anxiety, and depression. Moreover, the financial burden of medical expenses, specialized care, and assistive devices can strain family finances. Balancing caregiving responsibilities with work and other obligations can also be challenging, necessitating support networks and resources for families. (Brian Murphy, 2021) 

Videos are also easier to find and more accessable for families seeking advice or help. Such as; Living with Sanfilippo Syndrome & Cure Sanfilippo Foundation Video



Issues in Societal Areas and Solutions (Accommodations)

Societal areas such as schools and work settings present unique challenges for individuals with Sanfilippo Syndrome. In educational settings, accommodations may include specialized instruction, modified curriculum, assistive technology, and support services such as individualized education plans (IEPs) and 504 plans. (A guide to understanding sanfilippo syndrome n.d.) Additionally, fostering a culture of inclusivity and acceptance can create a supportive environment for students with disabilities. In the workplace, accommodations may involve flexible work schedules, ergonomic modifications, and job coaching to enable individuals with Sanfilippo Syndrome to participate fully and contribute to the workforce. (Emily Malcolm, 2020)


Mainstreaming the Child/Adolescent

Mainstreaming a child or adolescent with Sanfilippo Syndrome into the classroom structure requires careful planning, collaboration between educators, parents, and healthcare professionals, and individualized support. It is essential to assess the child's unique needs, strengths, and challenges and develop a comprehensive plan to promote academic and social success. This may involve adaptations to the curriculum, specialized instruction, assistive technology, and ongoing monitoring and adjustments as needed. (Emily Malcolm, 2020)

Societal Awareness and Accommodations 

It is crucial for society to be aware of Sanfilippo Syndrome and implement accommodations to ensure that individuals with this disability have equal access to education, employment, healthcare, and community participation. (A guide to understanding sanfilippo syndrome n.d.) By promoting awareness, advocating for inclusive policies and practices, and providing support and resources, we can create a more inclusive and equitable society for individuals with Sanfilippo Syndrome and other disabilities. (Emily Malcolm, 2020)


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Ciations: 

Medicine Plus. (2024). Mucopolysaccharidosis type III: Medlineplus genetics. MedlinePlus. https://medlineplus.gov/genetics/condition/mucopolysaccharidosis-type-iii/

.Marcin, A. (2022, October 18). Explaining the symptoms of Sanfilippo syndrome. Healthline. https://www.healthline.com/health/sanfilippo-syndrome-symptoms?scrlybrkr=dc47b7d1

Brian Murphy, Ph. D. (2021, February 25). Respite care and how it may help Sanfilippo syndrome caregivers. Sanfilippo Syndrome News. https://sanfilipponews.com/health-insights/respite-care-sanfilippo-syndrome-caregivers/

Emily Malcolm, P. (2020, March 23). Tips for educators of children with Sanfilippo syndrome –... Sanfilippo Syndrome News. https://sanfilipponews.com/health-insights/tips-for-educators-of-children-with-sanfilippo-syndrome/

A guide to understanding sanfilippo syndrome. (n.d.). https://mpssociety.org/wp-content/uploads/2021/06/MPS_III_Sanfilippo_Syndrome_Final.pdf

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